Deaf Anxieties

I unintentionally missed ‘Blogging Against Disablism’ Day (BADD) 2009 as well as BADD 2008 (May 1). Last year everyone said that BADD 2008 was the best yet, and I couldn’t help thinking, “I drop out, then everybody remarks on the rise in quality!”

You won’t get rid of me that easily, though. I have various ideas rattling around in my head like peas in a drum but never seem to have time to capture them. Also it becomes harder to talk about personal experiences (apart from light, everyday accounts). In any case, I hadn’t forgotten about BADD. My thoughts this year concern anxiety and depression issues amongst the deaf.

I was born deaf (to hearing parents) at a time when children (certainly in the UK) were discouraged from signing. Thus I was brought up orally, wearing hearing aids from around the age of 6. My first hearing aid was a box that clipped to my clothes. If you accidentally caught the wire with your hand, your earpiece would be yanked out of your ear — made you feel awkward.

Of fairly dominant personality as a young child, I tended to be the ringleader in my primary class at deaf school. I wasn’t afraid to voice my thoughts concerning whatever we were discussing or watching, and the rest of the class would say “yes, we agree with Diddums!” It was a sweet class, now that I remember…

At home I regularly challenged my sister (also deaf) even though she was older and stronger. We fought like cat and dog. As time went by, I became quieter and less inclined to argue. I saw that as a positive, more peaceable quality, but took it so far the other way that I began to wonder! I was losing confidence in my own understanding of what was going on, and it’s hard to take a stance and support it when you worry that you missed something important.

Anxiety surfaced quite early, though not enough for panic attacks at school — thankfully, I was free of that particular problem till I was 19. One day, when I was old enough to go shopping without adult supervision, there was a particular album I was after. I went into a store and handed the assistant a note of the record I wanted, and fidgeted while waiting for her to check. They didn’t have the record in stock. I thought I had disguised my nervousness, but at home my friend surprised me by saying to my older sister “she was so flustered!” and waited for laughter. She didn’t get the reaction she hoped for, as my sister said nothing — but I felt bad about being flustered and being caught out in it.

For a while I was convinced the real anxiety started when I was 19, which was when the panic attacks began — but when you look back far enough, you realize the seeds of it were always there.

Take my first day at the local High School… the babble of children in those echoing corridors and gym hall! When my sister introduced me to the deputy head, he asked me a question and I didn’t answer — too transfixed by the seething mass around us. “She’s overwhelmed!” he said.

While still in high school, I remember telling a visitor from the deaf school that I wasn’t happy in groups of people, and she did not seem surprised at all. I was afraid she would tell me to get on with it and not be a silly… but she didn’t. She filled in the blanks for me where I stopped talking, and I went home thinking how maybe she had seen this happen before.

People would advise me, “just ask for a repeat” or “tell people if you didn’t hear,” and I blamed myself for not doing that… but it was hard to interrupt a conversation without being rude, and the conversation would go on and on until someone stopped it to ask me something. ‘Just asking for a repeat’ wasn’t easy either, because sometimes you wouldn’t understand no matter how often it was repeated, and the person doing the repeating would start to go pink with frustration and embarrassment. So you would bow out by pretending that you got it. In the end you didn’t ask for repeats at all unless it was unavoidable… you already knew what would happen, and that you would be asking people to repeat everything all the time.

In the end, being in such a group meant being bored, embarrassed, and thinking a great deal less of myself. It made me feel different because people observing the group would look at you as being the only one not talking and laughing. I would long to be on my own or with a close friend, doing something I wanted to do where I would feel competent and at ease.

The quality of the sounds I heard also seemed to play a part. At university I loathed the dining hall… people shuffled about and scraped their chairs, clattered cutlery, clashed trays and dinner plates; laughed and chattered. It was all too loud; too echoing. I ‘froze’ a few times and was unable to finish my food. Soon my friend began to recognize the signs; I remember her saying, “oh, I know that look! Let’s go.” We worked out the quietest times to eat, which were usually after everybody else had finished.

In my late 20s, waiting outside a cinema in a long queue, I was fine because I was with friends. Then I got tense. The anxiety rose, and rose, and there seemed no reason for it… till a car waiting nearby roared away and left us in peace. That was when I realized it had spent the past five minutes vrooming and revving loudly. It was a busy street and I hadn’t really been paying attention at first, but it seems the noise got to me anyway.

Perhaps the hearing aids have played a part in my anxiety… amplified noise: formless and unhelpful. It seems to me that I’m more relaxed when I don’t wear them at all. Everything’s silent and people float past as though in a dream. Once I was in a long queue in the bank when my batteries quit; I normally hate queues and banks, but this one time I was almost euphoric. If I can’t understand someone, they have to write it down — the pressure to make reasonable (and correct!) sense of what I hear is somehow not so great.

Where Mum is concerned, it’s amazing how much I absorb of what she is trying to say even when I can’t hear her voice at all. Recently I’ve not been wearing my new digital hearing aids because both filters gradually got damp (stopping them from working) and my clinic hasn’t laid in any spare parts at all. They said they didn’t think they would be needed ‘this soon’. The old analogue hearing aids didn’t have these wretched filters… it was easier to dry them out ourselves. These ones will NOT dry out at all, so I have a bit of a bone to pick with modern hearing aid designers! They may be better hearing aids, but they’re also less usable.

Without hearing aids this past while, I have communicated with my family by writing, lip-reading and gesturing. As we are learning the British Sign Language alphabet, I decided to try it out on Mum, signing the name of her fat cat…. MOLLY. She got it right away, and said “Molly”, pointing at the corner of the house where Molly normally hangs out. “Fatso,” she added affectionately (without writing, signing or repeating it), and went upstairs! I didn’t hear her voice but I knew perfectly well what she said.

Sometimes her message eludes me entirely, but other times I know when she’s said something I wasn’t necessarily expecting. That doesn’t make it a perfect or relaxing way to communicate, and I wish that we had been allowed to learn sign language at school. And not just us…. everybody! I still haven’t learned, partly because my growing anxiety and discomfort in group situations has stopped me from attending courses. That is a vicious circle in itself. I have always felt that communication is more important than how we communicate, though I can’t offer myself as a good example. Doubtless it’s because I don’t have that extra resource that I feel it so strongly.

We borrowed two British Sign Language books and a video from the library. One of them is quite an old book from 1988 — British Sign Language: A Beginner’s Guide by Dorothy Miles. It received two reviews on Amazon UK; neither of the reviewers seem impressed. Personally I enjoyed the potted world history of deaf people in education and society. I had a rough idea of some of it, but didn’t know everything described there. It was a shocker, and I found myself growing angry. Perhaps I shouldn’t have, as I haven’t read around a lot on the subject yet, and most people have been doing their best by their own lights, but it hit home anyway. I have been affected by some of the policies described in the book, and not in a positive way.

It brings to mind a Dean Koontz book (Seize the Night). My favourite, laid-back, surf-loving character, Bobby

“… didn’t trust those he called ‘people with a plan’, those who believed they knew how to make a better world, which seemed always to involve telling other people what they should do and how they should think.” [1999 paperback, p192].

In our history and present there have been plenty of people with a plan for the deaf, and it doesn’t seem to have a lot to do with acceptance. It’s no wonder that many of us end up with problems, emotional and otherwise.

Searching the internet for articles connecting deafness and social anxiety, I came across this piece in The Rebuttal: Deaf Phobias. I was pleased because it says much that I’ve been thinking for years, and up till now I haven’t found all that much on the subject. Mum said, “misery loves company” — but I prefer the line that popped up in a film about C.S. Lewis: ‘We read to know that we are not alone.’ I hadn’t thought about it as such… I think of reading as an escape. But it’s true, isn’t it? It’s why I go on the internet and scratch around to see if others are thinking and experiencing the same. There aren’t always answers for our problems; at least, not immediate answers… so it helps simply to know there are others, and that I’m no different from anybody else.

The Modern Mob

When reality bites, it leaves deep scars – long but worthwhile article on talk shows by Carole Cadwalladr of the Observer.

Oddly, it’s not showing up on my front page. I remember when Blogigo did that to me… some sort of glitch. I do hope that’s not happening here as well.

Is it April 1st? (Stares at Calendar)

Getting Jeremy Kyle to noise up people on benefits is sick The Daily Record.
Labour bid to work with Jeremy Kyle The Observer.
Government and ITV consider joint Jeremy Kyle series the Telegraph.
The government should not look to Jeremy Kyle for answers the Observer.
Jeremy Kyle humiliating benefits claimants won’t benefit us the Mirror.
Trust Jeremy Kyle to get the spongers back to work Times Online. (I have a different twist on how it *could* possibly work well, though it probably wouldn’t).
Jeremy Kyle Gets Britain Working – I kid you not! Steve Green’s Daily Referendum (interesting discussion).
Should the taxpayer pay for Jeremy Kyle? the Telegraph, opinion.

I’m still looking to see if it’s April Fool’s Day!

Presumably they would only show those they think are scamming or who have lost their way somehow… but who’s genuinely able to judge? People have made mistakes before and have executed the innocent and so on… I imagine whether they get their chosen victims back into work or not, this would open up all sorts of cans of worms, both visible and invisible, shown and hidden.

Thinking a little more: if it was found not to be as straightforward as imagined, they might turn round and say so. Which could be a good thing. Or they might hem and haw and sweep it under the carpet, which wouldn’t be quite so good.

When I was looking around for confirmation and other perspectives, I found this thread on the Digital Spy forum. Someone commented (and I’ve noticed myself, in general TV) that celebs, hosts and approved guests have a nice misty warming filter put on them, and others (especially those being scrutinized or criticized in some way) are thrown in a harsh cold glare that picks out every pore in their skin.

Inclusion in the World of Film

Today I was catching up on my blog-reading (slipped a bit) and found a post I enjoyed by Liz in Fate is Chance, Destiny is Choice: Inclusion.

I know exactly where she’s coming from when she speaks of the feeling of panic you get when everybody in the classroom starts a mad scramble, and you don’t know what is going on because you didn’t hear the statements that led up to that moment. Gosh, that brings it all back! I didn’t have any notetakers and wouldn’t even have thought of it. To catch up, I read books, and they were as often my family’s choice of books as the school’s, so maybe I knew things the others didn’t, and vice versa. I was always a little ‘not fond’ of school, and I’m sure uncertainty was the main reason why.

Malfunctioning subtitling equipment, gosh, yes. I haven’t tried the ones in cinemas, but the ones in TV are malfunctioning all the time; or the TVs and receivers garble the subtitles/captions for whatever reason. Someone like me isn’t able to pinpoint why, and even if the experts knew why, they won’t be in a hurry to explain it to their customers – they don’t want us interfering or making ‘unreasonable’ demands. That sounds paranoid, I know, but that comes from general life experience and observation! There is so little out there that’s subtitled… for reasons of cost and hassle, apparently. I like to think folk are doing their best to change this situation, and I’m sure some are, but I can’t help suspecting that other people don’t care, and yet others are more interested in an easy life and profits.

I’ve always felt that film editors should consider this a little more (if allowed by the management)… you know how some pictures are very fast moving… take a look at Disney’s Hercules as an example. It’s almost impossible to watch the film AND read the subtitles. In extreme examples I have resorted to rewinding DVDs and videos in an effort to catch something that whipped past. I’m a fast reader; I have learned to absorb chunks of subtitling in the blink of an eye, as in the next instant it could be gone… but sometimes I’m just not fast enough. I’m pretty sure speedy filming makes life harder for the subtitler as well as for the subtitle-reader. The subtitler’s mission is to place as much meaning as possible in a small space and increasingly small amounts of time. My point is that film editing could be more inclusive but isn’t much considered, if at all. Does film need to zip past quite as fast? Why? Quite often the commercials are slower and better subtitled than the movie we have just barged through.

That’s all I want to say for the time being; I think I’ll get a soothing mug of coffee now!

Confirming I’m Me

Life is Like Wading Through Treacle

My cr£dit card company have begun the annoying practice of putting the following sticker on my replacement card: “please call this number to confirm that you have received this.”

I’m deaf – I can’t call that number.

I asked my sister if she was getting that sticker on her cards as well, and she said she was in such a mood about hers that she marched into her bank branch and asked a member of staff there to do the ringing up. I thought that was a good idea, which was why I was waiting in a bank queue yesterday. I asked if I really had to ring that number, or if I could safely ignore it, but she said “do you want me to ring for you?” and I said “yes please.”

It took a bit longer than we expected… she managed to get through when she rang the number, but the people at the other end wouldn’t believe her, and refused the request to confirm my card. Fortunately she had an ace up her sleeve in the form of a private number, so she rang that, and this time it was accepted. Presumably they knew who she was on that phone.

The bank clerk agreed it was all terribly difficult, and when we were talking about it later, Mum said, “it’s so unnecessary.” I said if they didn’t believe she was who she said she was, how would they have believed me? Presumably they’re not allowed to ask me my pin. How would they know who I was?

All these questions. What I really wanted, I suppose, was some indication that calling was optional. (Ha). Or a little slip to fill in and send off. I thought they used to do that. What happened to that plan?

The thought of having to go through this every time a replacement card arrives makes me tired. I wonder if switching to another cr£dit card would be a smart move… or do they all pull that trick?

Pigeon-holing (also Turning Point)

At work a few years ago, the girl at the next desk said she knew a lady just like me, who has poor hearing in one ear (mine is in both ears). This lady speaks and lip-reads so well ‘you would never know’. She’s a very bright and able lady who does X for a hobby and Y for a career, and uses the phone.

I smiled and was polite, but felt depressed. What was I doing wrong that the other lady was doing right? Would I ever be able to socialize in such a way that people would actually not know I was deaf? Most people know it the minute I open my mouth, but normality seemed to be the ideal to strive for.

I’ve been told, “you are speaking better than some of the people in this office,” but I put that down to friendly encouragement while I was going to speech and voice therapy. Too many folks were still giving me odd looks and saying, “what?”

That was when I was trying to achieve that ideal of appearing normal. The harder I tried, the worse it got, and my only real recourse was to write things down – which lays you open to the disapproving attitude that you have failed. Perhaps you can spell and punctuate fifty times better than the person you’re passing notes to – but you have still failed.

It wasn’t till later, going over the conversation in my mind, that I wondered, “what would she think if I said one day, ‘I know someone just like you – she has good hearing.’”

Her reaction would doubtless be: “That doesn’t mean she’s anything like me.”

Well – quite.

Comments for this entry (during its previous life on Blogigo):

1. Attila the Mom wrote at May 1, 2007 at 19:15: Lovely, lovely, lovely! I have got the biggest smile on my face right now.

2. Pacian wrote at May 2, 2007 at 00:00: I hate people who decide for themselves how easy something should be for you to do.

3. Wheelie Catholic wrote at May 2, 2007 at 03:16: Glad I stopped by here for BADD – this is an insightful post. Really shows how comparing can be so – not useful. I don’t like conversations where people stop short of saying something but imply things (that fill in the blank you describe so well) about “how I’m handling my disability” . I feel like saying “I’ll hand out a survey next week and you can fill that out” – Am I a 10? a 9? oops only a 5? LOL that’s how ridiculous it gets….

4. Diddums wrote at May 3, 2007 at 00:16: Thanks to all for the comments! I was pleased to see you drop round.

I noticed some of the other BADD posts were saying people try too hard to connect and end up saying the wrong thing. I was probably seen as someone who had the potential to do better – and to be fair, I thought so too. It was only when I tried so hard that I discovered more clearly where my limitations lay, and it was a turning point (though gradual) in how I perceived my relationship with the rest of the world.

A Personality Puzzle

I’m still reading through the blogs on disablism – there have been some amazing posts and great blogs. I’m determined to read all of them, but that list expands by the minute! I have to get some sleep now, but I will continue tomorrow, and check to see I didn’t miss any new ones.

Meanwhile, I’ve had a thought about something.

Over a year ago, the BBC carried out a personality survey of the UK population. If I remember right, they discovered that the biggest personality type among those who answered the survey were ‘realists’. Did anybody else see this? My sister did the online survey and was counted amongst the realists. (She’s like Norb from The Angry Beavers – clear-sighted and efficient).

My personality type was Idealist. (“Aw nuts!” as Dag would say).

I got Mum to do the test as well. She’s not so confident with the computer so I called up the site and waited while she answered the questions. She was pegged as an idealist as well.

I said “you didn’t answer all the questions exactly the way I did.”
“Oh,” she said. “Was it the bit about interacting with others you answered differently?”

Yes – I was a little stumped how to answer them. There was the one about how much we talk when we are out with friends. There’s a difference between how much I (with my hearing loss) would like to join in, and how much I’m actually able to. So how do you answer it? A bit of a poser, until you remember that the quiz is about personality, not abilities.

That said, I can’t remember now what answer I gave. It just amused me at the time that in spite of the Disability Discrimination Act (DDA), which was being talked about a lot just then, this nationwide personality test was a little wide of the mark.

Well, it’s easy to pick holes. I imagine it would be challenging (but not impossible?) to write a test that took account of such… er… anomalies. I can’t remember it in any great detail so maybe the test was OK – particularly if those completing it were keeping in mind that it was all about personality and not ability.

I mean, if I go out with friends and feel like getting involved, but they’re talking so hard that I can’t get a word in edgeways… does my silence (and unwillingness to bring them up short, something that’s usually counter-productive) still count as being my personality? After all, it’s how I behave in reality. That’s part of my personality, isn’t it? Is it? Now I’m stumped!

Never mind – it was just a quiz. And I’m still an idealist.

Good night to all!

D I S A B L I S M

I’m not usually stuck for words.

Normally I’m overflowing with observations, discoveries and commentary. There’s something discouraging about the word ‘disablism’ – something slippery and out of reach. It’s as though I don’t have access to it even as a word. In my mind’s eye it has a pale green glass surface and hovers coldly above me.

It can’t possibly have anything to do with me – it’s such a stark and unforgiving word, and I’m only me – daughter, sister, friend, neighbour. A real person with two cats and a mortgage.

I used to be 4, sitting on a boat in the sun. I drew pictures of fish, houses and trees, and played with Matchbox cars and Lego. When I was 6, I was in the Brownies – my favourite game was ‘Traffic Lights’. When I was 8 I had a tortoiseshell kitten called Bluebell. When I was 15 or 16, my favourite pop groups were UB40 and OMD. In High School I was top of my class in English – people raised their eyebrows and told me deaf people were usually better at Maths. That didn’t make sense to me and still doesn’t. I scored an A in Higher Latin – the class only had four pupils and we got on really well with the teacher.

After leaving school I attended university and landed a Joint Honours degree, yet somehow I’ve been out of steady work for nearly 8 years. I’m only called for interview if I don’t let on that I have a profound hearing loss. It’s funny how quick they call me – suddenly I sound employable!

On one occasion they lacked caution and told me I couldn’t have the job (working with computer files) because I was unable to answer the phone – even though this wasn’t mentioned in the advertisement. I thought it was only about data input and filing, which would have been fine for me, if rather dull.

My sister tried for a job where she was told (at interview) that people were rotating the tasks. This meant she would occasionally end up manning the desk and dealing with the public. This was not what she applied to do, and she wouldn’t have managed it as well as the others. So no job for her.

I was not taught sign language as a child and would probably be described as oral deaf, but that does not mean I find conversation easy – rather the reverse. Over the years I received negative vibes (from outside the family) about writing notes or using simple body language if communication became difficult. I eventually lost my courage, and mostly I don’t expect it from anybody now. I let them talk, and move on.

About ten years ago I developed agoraphobia, which I suspect was caused by communication difficulties and stress. I learned how to handle it, but it adds to the difficulty of obtaining work. Every time my sister shows me a job advertisement, it says “you must be bright, breezy and confident.”
“That rules me out, then,” I say. “I can’t possibly apply for that!”
“It’s just employer burblespeak,” says E, prosaically.

Maybe, but for a long time now I’ve been thinking there’s discrimination against introverts. Don’t get me started on that.

Sometimes I wonder which is really me – the person sitting quietly in a group situation, unable to join in properly and feeling a total prat, or the person full of talk (like here)? My own frustration and dismay tells me the answer to that. Like it or not, disablism does concern me. Much of it subtle and unintended, everyday stuff, shrug-off and get-on-with-your-life stuff – but it affects, shapes and restricts me all the same.

There are over 100 blogs and podcasts dealing with this difficult subject today – to find the others, visit Diary of a Goldfish. Her own piece is excellent.